Thursday, August 22, 2013

Fall is bananas! For us it is our largest awareness and fundraising months with Walk to End Alzheimer's, but it also seems these are the months that everyone checks back in from summer vacation. There are a number of conferences, health fairs and organizations all looking for vendors, exhibitors and speakers. AND we can't forget football & tailgating!! Needless to say during these last few days of August as I look at our Chapter calendar, it takes all of my energy not to have a stage 3 meltdown. Next week is also the only time this summer W & I could fit in some time away for ourselves.

Last Friday evening I arrived back in town after a stressful 2-day meeting in Columbus. W suggested we head down to the river for a run, and we could start planning our upcoming vacation needs. As we walked toward the river I started thinking out loud...I hope there is internet, I have to stay connected...I have this conference call, and that conference call, and it is the week before our first Walk week so I know there will be things I need to do to help with Walk.... In my mind I am reviewing all of the millions of things we have coming up and what I need to do to prepare....I can feel myself entering Stage 2 meltdown headed toward Stage 5...W stops, and looks at me. LK, you need to learn how to delegate, you are not the Walk coordinator anymore, you have to take time for yourself, let your brain rest, everyone will be fine without you. I want us to have a peaceful vacation...

WAIT ONE MINUTE. Is he lecturing me!? Oh.No.He.Didn't. My mind went black with anger, what does he know about what I do and don't do. What I do delegate and what I don't delegate.... We made it to the river for our run, and I left him in the dust, my seasoned running legs going as fast as my angry brain. The voice in my head egging on my rage... well he doesn't know how important I am, or what we do, how many people rely on us. Doesn't he know these next few weeks are so critical to our budget and what we can do to help people throughout the year.... Doesn't he remember those times he had to work during our vacation....After our run I silently stewed all the way back to our cars. I didn't speak to W all weekend I was so mad. Sunday, I was listening to my favorite podcast, On Being with Krista Tippett, her guest said something that struck a chord in my angry mind, It's something that if everyone could just realize how special it is to be alive on this little blue speck in the universe. It's a miracle that life exists at all and that we have a piece of time that is ours, whoever we are, shorter or longer, whatever it is, but to really be a part of the action and to respect where we have come from, where we might be going.Hello gravity, I am coming back down to Earth now. My mind was so consumed with the storm of stress, anxiety and insecurities of upcoming tasks, that instead of a seeing a hand reaching out to help, all I could see was a giant finger, poking at my red-hot nerves. I wasted 48 hours of my precious time over such a trivial thing. I share this story because I think you might be able to relate.

Sometimes as caregivers we get so good at masking our internal stress, anxiety and most of all insecurities, that these feelings end up turning into red-hot electric fences that jolt anyone away that tries to offer a lending hand or a little advice. In our minds we think, no one can do this as good as me, no one knows what I do everyday, your help isn't helpful... W was just trying to offer a little help, to make me feel supported. And instead of trying to teach him how to best help me, I pushed myself off the deep end, and only made myself more miserable and stressed out. We have to clear the storm in our head in order to expertly manage the storm headed our way.How can we be better at accepting that people want to help us AND teach them how to best help us? If I had my head clear I could have seen W was just trying to offer the only support he knew how. And maybe if my mind was right, I could have diverted him, "you know, as the former Walk and Development person I am keenly aware of what I wanted and needed from the executive director and I think I am meeting their needs, but if you can run some of our vacation errands this weekend, I could really use the time to prepare for our upcoming board meeting that is really stressing me out."In those moments where you feel you are headed straight to stage 5 meltdown, call us. We are here to help you work through challenges.We talk things out, help you look at all options, and build a plan to take on the impending storm. Most importantly try to help you not reach stage 5 melt down like me. We are here 24/7 at 800.272.3900. My great friend Emily Bennington helps me to keep this concept in the forefront of my brain check out her books and blog at emilybennington.com. Also, one of my favorite books on this topic is Thich Nhat Hanh's The Art of Power. ALZNEWS

ZUMBAthon THIS Saturday! Head over to Mountaineer Middle School in Morgantown for a Zumba thon to raise funds for Walk to End Alzheimer's! Check in is at 9:30, the event starts at 10 am, and the entry fee is $10/person!

Islandfest, hosted by the Mountaineer Parrot Head Club in Parkersburg, will be held on August 30 poolside at Parkersburg Country Club. For tickets or questions call 304.482.3218.

We are piloting a new piece of Walk to End Alzheimer's at our Parkersburg, Morgantown and Charleston Walks. We will be setting up a Living with Alzheimer's tent. This tent will be for individuals with Alzheimer's disease, it will offer a quiet place to sit in the event the crowd gets overwhelming, some educational materials, and an opportunity to meet other people who are also living with Alzheimer's disease or dementia. If you would like more information about our Living with Alzheimer's tent, give us a call at 800.272.3900 or email at wvinfo@alz.org.

Nobody lay a finger on my Butterfinger cookies

I can't help but think of Bart Simpson when I think of Butterfinger candy bars. I love them, there is something about the sweet, kind of peanut buttery chocolaty goodness. So, I went to the grocery store hungry, and came back with a bag of mini-Butterfingers. Do you ever do that? I hope I'm not the only one! So in order to avoid eating the entire bag, I thought hey, I'll make cookies! Can you tell how much I love cookies?

Preheat the oven to 375. Combine 1/2 cup of unsalted butter with 3/4 cup of sugar.

Monday, August 12, 2013

Dear Friends,
It is that time of year, again! Wait, what!? Back to school time!! When did the fall arrive?

I do not have children, so the Back to School season only serves to perpetuate my obsession with school supplies that become readily available and inexpensive this time of year! However, I have a lot of friends who are busily preparing their children to head to class. Including our own Evan, who sent his oldest child to her first day of kindergarten on Thursday. It may have been allergies, but I think I saw a tear in his eye...

Back to school season got me thinking about a fun day Mr. Blueberry (Evan), Kaarmin and JT had last spring at Elk Center Elementary. Lilly, who is one of our great Charleston Walk participants, approached me one evening at a research event we hosted. She explained to me that there might be other kids in her class whose great-grandparents or grandparents had Alzheimer's or dementia like her great-grandmother, and she wanted to teach them about the disease and how her and her mom cared for her great-grandmother. So, we loaded up Mr. Blueberry, a copy of Grandma's Cobweb's and headed to the elementary school. The class was attentive and asked excellent questions. And just as Lilly predicted, others in her class had loved ones who had Alzheimer's or dementia. They shared similar experiences of being scared or confused, being sad or not understanding why grandma thinks I am my mom. They all shared good memories of their grandparents, and how they shaped their lives.

I find it remarkable how perceptive children are, how they are able to articulate difficult and challenging emotions so simply. As well as how forthcoming they can be about their on insecurities, and pointing out our own insecurities. How they are able to perceive when we as adults are tired or sad, angry or anxious, even when we are doing our best to cover those emotions up. And, how those emotions from us as adults effect them and their perception of the world. Caring for a loved one with Alzheimer's disease or dementia around children is no different. Children have a never ending yearning for knowledge, to know more to understand why. (My parent friends out there know this perpetual question, HA! Why? Why? Why?) What we have found, like our experience at Elk Center, children want to know more than just grandma is sick. It is so important that we help children differentiate the disease and grandpa, to help make their experiences together better. We want to keep those lines of communication open, and help prepare our children for changes that are going to happen. Most importantly, answer questions about the disease honestly and openly. Children know when you are sugar-coating.

What I have found most of all, is that children are always ready to help, with ideas and activities. We have some great activity kit ideas, for building activities that your loved one with Alzheimer's and your children can enjoy together. To create those moments of joy that your children can take with them as they grow up. And when they can't help they are ready to take on the challenge for themselves. Like Wilson, who joined us last year at the Advocacy Forum in Washington, D.C. He so clearly and effectively articulated that his great-grandmother is why he is so passionate about ending Alzheimer's disease, that there really was no way any of the Congressional offices could turn down our requests. Wilson and Lilly both pound the pavement each fall and summer raising funds and awareness for Walk to End Alzheimer's. Because they know that while they have already lost their loved one to this disease, they can help millions of others.

We have excellent resources for talking to children about Alzheimer's disease. A number of beautiful books, including Maria Shriver's new book that you can check out of our lending library. And we are always happy to take Mr. Blueberry on the road! We love coming to talk to schools and youth organizations to continue to build awareness and understanding of Alzheimer's and dementia. Send me an email at lkirksey@alz.org or give us at call at 800.272.3900!

ALZNEWS

Join me in a standing ovation for our first two members of the Walk to End Alzheimer's Champions Club!! Both of our Champions so far have raised nearly $1,000!! The Walk Champions Club is comprised of individuals who raised more than $500. You can find out more by clicking here!Champion Club Members: - Joe Mastracci, Team Triad, Wheeling Walk- Terri Schneider, Mid Ohio Valley Walk

This week we head to Ohio Council, a combined policy effort from all of the Chapters that serve Ohio. Our Chapter serves 6 counties in Ohio. If you are interested in our policy efforts in Ohio, email Wendy!

Your car is looking a little dirty, you should swing by the the Lazer Wash by the Food City in Bluefield, VA this week, they will donate $1 per car to Walk to End Alzheimer's!

Genesis Healthcare is hosting a fundraiser at the Power Park baseball game THIS Friday night! It should be a fun night, and the weather looks great! Contact us if you would like to purchase tickets, they are $5 each!

The Elm Grove Eagle Riders #1891 are hosting, Peggy's Run to Benefit Alzheimer's Research, this Saturday. Registration is at 11 am at the Elm Grove Eagles. This ride is inspired by our great friend and long-time volunteer Peggy Everly, who was with Alzheimer's disease. For more information contact, Mis, 304.599.5322 or Mike 304.547.1798.

Conquering Capitol Punishment Update

I am following my fundraising steps to success!! First, I personalized my fundraising page, and then I made a donation to myself. Self-donation is an important step to let everyone know you are personally invested in your own fundraising! I asked W to sponsor me at $3 per mile, and think I am going to do ask my parents to sponsor me at $3 per mile as well. Which, with my self donation will bring me up to $13/mile! Nearly half of my goal! This week I am going to hit up my social media friends! As far as training goes, this humidity is a killer! My friend Diana and I tried a 7 mile run on Saturday and nearly keeled over! Fingers crossed for a nice breeze on race day!

Squash Lasagna

Several months ago W came home from a business trip, and had discovered spaghetti squash. He is a big fan now, so I try to find different uses for this delicious vegetable. Spaghetti squash is a great substitute for pasta in any dish! The great part about this dish is there are really endless possibilities for vegetables to be included. Tonight I just added the squash and mushrooms. But, if you have zucchini or spinach on hand throw it in!

Take a spaghetti squash and chop it in half. Be VERY careful, these guys are hard to crack open! Once you get it open, scoop out the seeds and bake upside down at 350 for 45 minutes.

Hey! Look at that, I have left over sauce from my pizza, and some mushrooms!

To make this have a lasagna type feel, I like to add the creamy layer. If you want to make this an ultra healthy dish, leave out the ricotta mixture. But, who doesn't love a little extra yumminess! You only need about half of the tub. A little bit goes a long way.

To the ricotta, add a palm full of Parmesan cheese.

Followed by about a tablespoon of onion powder, 1/2 tbs of garlic powder, 1 tbs. of Italian seasoning, a pinch of red pepper flakes, and 1 tsp. of black pepper.

Should look a little like this: Now for the fun part, roll up your sleeves and squish!

Hey look the squash is done! Take your fork and pull the meat from the sides of the squash, see it looks like spaghetti!

Because I did not have very much sauce left, I am adding a little tomato puree to supplement. They are currently only selling it in GIANT cans at Kroger, which is not terrible...but I now have a freezer full of tomato puree.

Now, it is time to assemble the parts! Put a little sauce down so the squash doesn't stick.

Then layer in the squash meat. Thinking next time I might try mixing in an egg with the squash to see if it will hold the flat shape.

Now it is layer time, add a layer of ricotta mixture, followed by a layer of sauce...

Followed by my personal favorite layer, mozzarella CHEESE!

Bake at 350 for 30 minutes covered, followed by 15 minutes uncovered. It won't really cut like a lasagna, you more or less scoop it out. But it is a hearty dish! I would say this recipe will feed 4-5 people. Since it is just the two of us, we packed it in the freezer for one of our many busy nights!

Wednesday, August 7, 2013

But, I have found this week to be particularly difficult to write - which inevitably leads to procrastination. More like displacement. In my normal writing time I had a wicked ear ache, that led to a swimmy brain - ultimately a little undisturbed couch time. But, again just procrastination.

The real root of the problem lies in my waffling on issuing a public personal challenge, really putting myself out there. So it is now Tuesday. Time to face it down. Here it goes.

Throughout the past few months I have been SO inspired by our Walk teams and their great efforts to rally their teams and raise funds. From motorcycle rides to bake sales to a steak fry, teams are pairing activities they love with their passion for the cause of Alzheimer's. Leaving me to ponder, what can I do as my first fundraiser for the year to rally my team, raise funds and build momentum. I have really been racking my brain.

And then it dawned on me. I am taking on Capitol Punishment, the hill that is.

This is my favorite slide from an advocacy presentation developed by our great policy staff member Matthew Baumgart. It clearly depicts a steep hill, made up of all of the challenges that we face with Alzheimer's disease, and a person pushing the giant heavy rock that is Alzheimer's up that hill. The point of the slide, is that through advocacy work we can conquer each of the pieces of the mountain, until one day it doesn't exist.

But, Walk to End Alzheimer's is just as much a part of conquering these uphill challenges as our policy efforts. Walk and Policy are tied together. Walk to End Alzheimer's fuels our advocacy efforts and awareness efforts.

Hmmm, big hill, that people can relate to, that can be conquered...

The famous 15 mile Charleston Distance Run has an equally famous hill, aptly titled Capitol Punishment. It is a little bit more than a mile straight up 119 from MacCorkle Ave. to Oakwood Road. Rookie distance runners are fooled into thinking that once you round the bend at Oakwood Rd. it is the end of the pain of Capitol Punishment. But, in reality Capitol Punishment actually ends at Elizabeth Memorial Church, a little less than a mile on up the hill. I think they don't tell you because if you knew you had to run that far straight uphill, everyone would run away screaming! (Sorry race organizers, I had to spill the beans).

I am going to take on the Charleston Distance Race to raise funds for my team. My goal is to raise $20/mile for a total of $300 - a little less than half my personal fundraising goal.

This idea came to me as I was pounding out my training miles and going through my policy presentation in advance of our Caregiver University. My mind kept coming back to my visual aid, the lessons I have learned from my work at the Alzheimer's Association and taking on the Distance Race. As the miles passed under my feet,the comparisons kept growing. Just like taking on Capitol Punishment:

Conquering Alzheimer's takes discipline and practice. We learn and practice the facts about Alzheimer's, the 10 Signs, practice our communication techniques to help our loved ones, practice our safety plan, and practice our fundraising pitch. We know the tough climbs are coming, but we will be prepared.

It is o.k. to get tired and slow down - even walk, but we can't stop or turn back. We've come to far, we have to keep going. For our Ws, for our mother's and father's our mammaws and pappaws, for our children and grandchildren - we have to keep fighting up that hill.

Self-doubt will try to sneak in, but we know it is false and ultimately we will prevail.

We can't do it alone. The others around us who are climbing this same hill are our support system, they help us keep our pace and build our momentum. We need our support group!

Cheerleaders are just as important! Their positive energy and friendly faces to keep our spirits high.

There will be moments where we think we reached the summit, only to round the corner and face even greater challenges.

The end of Alzheimer's starts and ends with one foot in front of the other.

While the end of Alzheimer's, or even some of the pieces of the mountain won't disappear when I reach the finish line, our combine efforts are making significant strides to change the future. And that is enough for me to say, bring it on!

So, over the next few weeks I am going to be challenging my friends and family to support my efforts. Through email, facebook, and maybe even a rallying video I will work to meet my $20/mile goal. Then, bright and early on August 31 I will strap on my running shoes and climb that mountain, not just for me, but for my family, for my friends, for all of you. For the END of Alzheimer's.

I want to hear from you! Are you doing something you love to rally your Walk team? Are you taking on a challenge? Your stories inspire so many others! Send me your story and favorite recipe to be featured here on the Dish! Send me an email at, lkirksey@alz.org.

ALZNEWS

This week we launch the first class of our online dementia care training course. There is still space for you to sign up! But you need to act fast! Click here for more information!

We are hosting a listening session for caregivers on Tuesday, August 20 at 5 pm at our Charleston office to gather experiences in hospital and other acute care settings. This listening session is a grant funded project. We need to hear from you! RSVP by calling 304-343-2717 or email wvinfo@alz.org.

Stay tuned to our Facebook page for announcements about upcoming Walk team events! Want us to feature yours? Email us at wvinfo@alz.org!

PIZZA!

I <3 pizza! And I especially love homemade pizza! The possibilities are endless, oh the cheese, vegetables & meats that you can pile in to create your favorite concoction.

As you know this blog is dedicated as a reminder to do something for yourself. To fit in moments of joy in the everyday. And pizza is just that. We hear from a number of caregivers the great joy of incorporating their loved one with Alzheimer's disease in the kitchen. From reminiscing to the activity of cooking - it is a great way to keep your loved one active and connected. The ease of assembly, and creativity of toppings make pizza the perfect project to take on together.

The Dough: Store bought pizza crust is perfectly acceptable! But if you are in the mood for homemade dough - this is a great one! Chef's note: I am a terrible bread maker, but for some reason this pizza crust comes together perfectly!

In an electric mixer, combine 1 package of active dry yeast, 1 1/2 cups of warm water (after lots of trial and error (with thermometers for the perfect temperature), I learned to just turn the tap on hot), 1 tbs. honey & 1 tbs. oil.

Allow the yeast to bloom for 10-15 minutes. It should look a lot like this:

Stir in 1 3/4 cups of flour, until the dough is sticky.

Pound out your stress by kneading the dough.

Then cover and place in a warm place for 2 hours to rise.

While your dough is rising, you can spend a little R&R time - OR make your own pizza sauce. I love making my own sauce - you can make it, then whatever you don't use works great lasagna or spaghetti tomorrow night! Start with a swirl of oil over medium heat. Add 1/2 of chopped onions, and a few cloves of garlic. At this point, it is good to stop and pay attention to how many cloves of garlic you are adding. This particular night....well let's just say there aren't any vampires on my block!

It is hard to explain the exact ration of the below seasonings. But I add a small handful!

Add 1 small can of tomato paste, then 1 can of tomato puree.

This next step is optional, but I love the flavor wine adds to a good red sauce. I add around 1/4 cup - and hard lesson to learn, but always use wine you would drink. Bad wine makes bad sauce.

Hey! Look at that, the dough has risen!

Dollop on your homemade sauce!

And decorate at will! Tonight we went classic - mushrooms, pepperoni and LOTS of CHEESE!

Bake at 400 degrees for 20 minutes or until the crust is the browness you desire... Wow! Wow!